Organ Transplant System: A Patient's Life Could Hinge On Geography

Because of supply and demand, those who relocate might not wait as long for a liver transplant.

In the world of organ transplantation, location is everything.

After waiting more than a decade for a liver, Jonathan Van Vlack was deteriorating. His gut swelled with fluid and toxins accumulating in his blood made him forget his own name.

Still, he wasn't sick enough -- not in New York, where about 2,000 others needed livers. too

"He's having a very difficult time right now," his wife, Laura, e-mailed a friend in March 2005. "We really need that liver to come."

Van Vlack died on his 53rd birthday.

Frank Evanac was stalled in the same line. By age 53, he had been waiting four years for a liver; he needed a kidney as well.

After a tip at a Fourth of July party, he moved in with his sister outside Jacksonville, Fla., and joined a new waiting list. He didn't tell his doctors.

Fourteen days later, a surgeon sewed in his new liver and kidney.

Two sick men. Two locations. Two fates.

The national transplant system prides itself on fairness: Organs are intended for the sickest or those who have suffered the longest.

So sacred is this code that violations in varying degrees forced three California programs to close in the last seven months. But there is a greater inequity: When, and sometimes whether, you get an organ depends largely on where you are.

The nation's transplantation system is divided into 58 territories, each with its own supply of organs. Most organs donated within a territory go to patients waiting there.

Since supply and demand are not evenly distributed, there are disparities.

In big cities, for example, social blight boosts disease rates -- and thus the need for organs -- but makes it more difficult to recruit donors. Transplant centers in less crowded territories are often choosier about their waiting lists. Ethnic compositions, car accident rates and the skill of organ recovery agencies all play into whether a territory is flush or deprived. Sometimes all that separates a wait of years from one of months is a line on a map.

Take the Hudson River. On the New Jersey side, transplants are routinely given to patients much less sick than Van Vlack. In Manhattan, patients must reach the brink of death.

Geographic inequities exist for all organs, but consequences are direst for liver patients. Kidney patients can survive on dialysis for years, and drugs and artificial devices can help keep heart patients alive, but most patients with liver disease deteriorate until they die.

National regulators acknowledge the disparities but say some are inevitable.

"We think the system is working very well," said Dr. James Burdick, transplant division director at the U.S. Health Resources and Services Administration. Still, he said, "we think it could be improved."

It is scientifically feasible to provide livers across territory lines for the sickest patients. In an ice-cold preservation solution, livers suffer no significant damage in the first 12 hours after harvesting, but in most cases, organ-rich territories don't share.

The longest lines for livers are in the territories surrounding New York, Los Angeles and San Francisco, which account for 30 percent of some 17,220 people waiting nationwide. The University of California San Francisco Medical Center has the nation's longest list, followed by the hospitals of New York University, the University of California, Los Angeles, and Stanford University.

Van Vlack joined the waiting list at New York's Mount Sinai Hospital in 1993 after doctors found his liver failing.

Van Vlack, a consumer-fraud investigator from Woodstock, N.Y., would not need the transplant immediately. He tired easily and sometimes felt numbness in his hands and feet, but he was strong enough to work. It went on like that for a decade.

Since 2002, livers have been allocated based on a score derived from three blood serum measurements, and Van Vlack's score was relatively low. This policy was aimed at distributing livers on an objective medical basis -- at least within a given territory.

Patients with liver disease often are able to live normally for years because the organ has the capacity to regenerate. Eventually, the liver stiffens, making it difficult for blood to flow through it. Then problems multiply. In the liver, which regulates dozens of blood proteins, filters toxins, produces bile and stores iron and energy, disease strikes as a series of ambushes.

One morning in early 2004, Van Vlack didn't recognize his two children or Laura.

It was the first of many bouts of encephalopathy, which is marked by confusion resulting from ammonia buildup in the blood.

Van Vlack's swollen abdomen had to be drained regularly. The muscles in his chest, shoulders and legs atrophied. Even so, there were hundreds in New York deemed sicker than he.

A doctor mentioned there were places where the waiting time was shorter. Van Vlack could not imagine having his transplant anywhere else. His new lease on life seemed to hover just out reach.